From Sun Magazine: 'Genius' pair rewrite rules of organ transplants, among other interests

Amy Davis, Baltimore Sun photo

Dorry Segev, left, and Sommer Gentry, practice swing dancing in their dance studio. Their four-level Canton rowhouse is a haven for their varied interests in music, dancing, and entertaining, as well as their academic research.

Dorry Segev, left, and Sommer Gentry, practice swing dancing in their dance studio. Their four-level Canton rowhouse is a haven for their varied interests in music, dancing, and entertaining, as well as their academic research. (Amy Davis, Baltimore Sun photo)

The glittery ideas they filch from fields as diverse as swing dancing, systems analysis, water skiing and medicine seemingly have little in common. But Segev and Gentry weave them together into a strong yet flexible structure designed to protect fragile lives.

Segev, 41, is a transplant surgeon at the Johns Hopkins School of Medicine, a pianist who studied at Juilliard and a former computer prodigy. Gentry, 35, an assistant mathematics professor at the Naval Academy, was a doctoral student when she caught the public's attention by designing a dancing robot.

In addition, the couple are champion swing dancers and avid slalom water skiers.

"I try to do something every day that I'm not good at," Segev says. "I don't want to go through life only practicing things I've already learned how to do. I embrace the process of improvement."

The two are poised to influence the nation's public health policy — and for the second time in seven years. They recently finished testing a formula that seeks to ensure that sick people in need of livers have equal access to donated organs, regardless of where in the U.S. they live.

By the fall of 2013, the Organ Transplantation Procurement Network — the governing body for the nation's transplant distribution system — is expected to decide whether to adopt Segev and Gentry's formula nationwide.

Experts say the liver algorithm has the potential to be as significant as the couple's 2005 breakthrough, when they devised a mathematical equation that exponentially increased the number of donors who can be matched with patients awaiting kidney transplants. In the past seven years, that discovery has either saved or dramatically improved thousands of lives throughout the U.S.

John Roberts, president of the Richmond, Va.-based National Network for Organ Sharing, is enthusiastic about the couple's work.

"Dorry and Sommer are superstars," Roberts says. "Both of them are in the genius category. What they're doing is very, very important. It probably isn't fair that your risk today of dying while you're on the liver transplant list varies by your ZIP code."

In person, Segev and Gentry are friendly and unassuming, even corny. New acquaintances are often flabbergasted to learn of their accomplishments.

For instance, the couple's kidney algorithm — which, like their liver formula, was devised in their spare time — inspired an episode of the CBS show "Numb3rs" and was the basis for an act of Congress.

Oh, and they've also placed fifth for three different years in the American Lindy Hop Championships, and in 2002 won the United Kingdom title.

"Dorry and Sommer are very accomplished at pretty much everything they do," says their friend Nina Gilkenson, co-owner of Mobtown Ballroom, the swing dance club that Segev started.

"They dance with everyone, especially Sommer. Dorry speaks in funny voices, and for at least 30 percent of the evening, they're making silly jokes. When people find out what they do for a living, they're like, 'What? Really?' "

The couple's Canton rowhouse reflects their idiosyncratic lifestyle.

They don't own a television. But there are a computer and a stereo in practically every room. Heating, cooling and lights are regulated by a computer system Segev designed. His desk is hoisted several feet above a treadmill.

But the piece de resistance is the ballroom, with gleaming cherry floors and light streaming from a large, half-moon window.

During a whirl around the floor, Segev and Gentry spin faster and faster around each other. Sometimes she is the nucleus around which his electron revolves, and sometimes it is the other way around. They twirl away, then return to orbit.

"I decide what we'll do and how we'll interact with the music," Segev says, "and she decides what the picture will look like."

Innovative minds

A similar division of labor marks their medical collaborations: He poses the problem, she solves it and he trouble-shoots the result.

"What's unusual about Dorry and Sommer is that they're greater together than each is individually," says Dr. Robert Montgomery, director of the Johns Hopkins Comprehensive Transplant Center and Segev's boss. "They're a combination that's tough to beat. They come up with very innovative approaches that make a huge difference in patients' lives."

In 2005, Segev was worrying about the roughly one-third of patients needing new kidneys who aren't medically compatible with a family member.

Sometimes, doctors find a second donor whose tissues don't match those of the intended recipient, but are compatible with those of the first patient — and vice-versa. A surgical round-robin then takes place in which both patients get kidneys from a stranger. But those exchanges, some of which involved a large group of patients and donors, were limited to surgeries performed in the same hospital.

"In 2005, I had a conversation with my boss in which I said how cool it would be if we could do this on a national level and have transplants done at multiple centers at the same time," Segev says. "But there were mathematical barriers.

"Dr. Montgomery said, 'The problem is that there would be too many people. You wouldn't know who to exchange with who.' "

When Gentry picked up Segev at work that day, he described the problem.

"Within a few months, we had put together an entire framework about how to do these transplants at the national level," Segev says. "It worked because Sommer and I come from different fields and have different skill sets, but we speak the same language."

Before Gentry and Segev devised their algorithm, perhaps 60 group exchanges occurred a year throughout the U.S. In 2011, there were 600. And in 2007, Congress modified a law to permit such swaps.

"Dorry and Sommer bring unique skills to decision-making and algorithmic thinking, an area that isn't well developed in medicine," Montgomery says. "Dorry knows what the point is. Sommer has tools and Dorry knows how to apply them in the real world. That's where the magic is."

Origin stories

When Dorry was 5, he and his parents emigrated to the U.S. from Haifa, Israel. In 1980, the family relocated from Ohio to the East Coast to further their son's musical training. Not only was Dorry a talented pianist, he had perfect pitch.

"Six months after we sold our home and moved to New York, I quit Juilliard," he says. "My parents still haven't forgiven me. I had gotten good, but I wanted to pursue other interests"

Not that he's forsaken music entirely. Segev still plays piano, plus guitar and violin. The couple frequently hosts musical get-togethers with friends.

In high school, Dorry started a company with his father that created software for medical offices. It was so successful that it paid for his education.

But Segev lost interest in writing code. That pattern is the downside to his drive, and it's one of the great frustrations of his life. He and Gentry will work like crazy to master a skill. But once they've succeeded, they grow bored.

As he puts it: "We sort of enjoy the progress part of the learning curve."

Segev hit upon a solution while in college. He started writing musicals for children and began performing in hospitals.

"I began thinking about going to medical school," he says. "I saw that medicine would allow me to express all aspects of my creativity."

Segev moved to Baltimore in 1992 to attend medical school at Hopkins. In 2005, he founded the Charm City Swing Club, which has grown to 2,000 members under the name Mobtown Ballroom.

It was swing dancing that brought the couple together. They met in 1999 at the American Lindy Hop Championships and married four years later.

"In the dance community, everyone kind of knows each other," Gentry says. "When I moved to Boston, people started immediately telling me about Dorry, who was doing research at Harvard. And they started telling Dorry about me. Something told them we were compatible."

As a teen, young Sommer was a goofball, known for wearing stickers on her face.

But she also became so immersed in her studies that she would fall asleep with her head in her books. After the girl won the academic decathlon for Ventura County, her mother told the Los Angeles Times that she sometimes had to order the 16-year-old to stop studying and go to the mall.

Sommer discovered her calling in calculus, with its glimpses of hidden order.

"Math isn't about numbers," Gentry says. "It's about finding patterns and structures. It's about recognizing that problems that look different — like scheduling airline flights and kidney transplants — have the same mathematics underlying them. That's exciting and beautiful."

Her approach to problem-solving is high-minded and playful. While studying for her doctorate, Gentry taught a robot named Fred (for Fred Astaire) to dance. Tutoring him in the Lindy Hop required mastering math concepts that came in handy when she worked on organ transplants.

"I like math that can change the world," Gentry says, "math that's about real things, math that can help people make better decisions."

At the moment, the couple is trying to fix what Segev describes as "the huge geographical disparity in access to donated organs."

"Depending on where you live," he says, "your waiting time for a new organ may be six months, or it may be 10 years."

Surgeons can only transplant organs that come from otherwise healthy adults who have died traumatically or from a disease such as a stroke that can't be transmitted to the recipient.

Rural areas have a bigger supply of donors, Roberts said, because a greater proportion of their deaths result from car crashes and other accidents. Conversely, cities have a dearth of available organs.

For people awaiting liver transplants, the inequity can be a matter of life and death.

"If you don't get a liver in the right amount of time, you'll die," Segev says. "At certain disease severities, patients in some parts of the country might have a 15 percent chance of dying in the next three months. But patients living in other parts of the country might have a 90 percent chance of dying."

Gentry and Segev recently finished a formula that they think will remedy this disparity while staying within the deadlines imposed by a liver that can survive only 12 hours outside the body.

"There's a trade-off between the transport time it takes to get a liver someplace and how fair you want the access to livers to be," Gentry says. "I'm looking at it mathematically as a redistricting problem. The organ transplant system is divided into regions. The same way that congressional districts can be gerrymandered to provide political advantages, the geographic boundaries of regions for livers can be redrawn so that each region has an appropriate balance of demand and supply."

Segev and Gentry realize their new formula is unlikely to win universal acclaim.

As Roberts puts it: "If half the people have to wait longer for a liver, they're going to be upset."

He likens it to the "liver wars" that began in 1998. According to published reports, at least six state legislatures passed bills defying a federal regulation requiring that organs be made available first to the sickest patients within each region. Previously, priority had been given to local patients who had waited the longest for a transplant — even if they were comparatively healthy.

Six years of lawsuits, negotiation and compromise followed. But, ultimately, the new rules gained widespread acceptance. Roberts hopes for a similar outcome for Segev and Gentry's new formula.

"There easily could be action in Congress to delay any changes," Roberts says. "But, my sense is that we're in a different place now. More people are seeing that there is a bad problem that might be fixed by making the system more fair."